dementia
Attending to the spiritual in dementia care nursing Louise Daly and Elizabeth Fahey-McCarthy
S
piritual care is an advocated component of nursing care (Royal College of Nursing (RCN), 2011; International Council of Nurses, 2012; Reinert and Koenig, 2013). However, despite a wealth of literature on the subjects of spirituality and spiritual care, a lack of consensus and conceptual clarity on their definition, meaning and content remains (McSherry, 2007; Reinert and Koenig, 2013). In particular, while there is a lot of writing on dementia and spirituality, there is limited evidence exploring how these relate to each other (Doherty, 2006). Spiritual needs can be challenging in dementia care, as they are not always prioritised among other care needs and it can be difficult to ascertain the person’s spiritual needs, particularly in advanced dementia. In addition, care staff may not always have the necessary experience or skills to ascertain and/or meet spiritual needs. This is concerning as care that does not address the spiritual, regards the person as less than human (Shamy, 2003). The purpose of this article is to explore both spiritual care for the person with dementia and some of the ways in which nurses can support the person’s spirituality.
Understanding spirituality According to many writers, spirituality is the core of who we are (Frankl, 1963; Narayanasamy, 2010; Eliopoulos, 2014). It can be understood as: ‘Universal, deeply personal and individual; it goes beyond formal notions of ritual or religious practice to encompass the unique capacity of each individual. It is at the core and essence of who we are, that spark which permeates the entire fabric of the person and demands that we are all worthy of dignity and respect. It transcends intellectual capability, elevating the status of all humanity to that of the sacred’ (McSherry and Smith, 2012:118).
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This understanding demonstrates that spirituality is complex and subjective, that it involves the values and beliefs held by a person but that it is not reliant on intellectual capacity, which may be challenged in the presence of dementia. Pike (2011) further suggests that spirituality is
Louise Daly, Assistant Professor; Elizabeth Fahey-McCarthy, Assistant Professor at School of Nursing and Midwifery, Trinity College Dublin. Accepted for publication: June 2014
British Journal of Nursing, 2014, Vol 23, No 14
Abstract
Spirituality is a complex and subjective concept. However, spiritual wellness is an important component in a person’s overall well-being and the spiritual support of patients is central to nursing care. People with dementia may not be well-supported in this aspect of care; this may lead to spiritual distress. Spiritual needs may be identified by taking the person’s spiritual history or, in the case of advanced dementia, by asking a person’s significant others about the important spiritual aspects of the person’s life. Spiritual care for people with dementia involves reflective practice and meaningful engagement with the person with dementia, so as to facilitate shared understanding. Furthermore, the support of the spiritual and religious beliefs of the person need to be facilitated within an individualised or personcentred approach to care and delivered within a multi-disciplinary collaborative context. Key words: Dementia ■ Spirituality ■ Nursing care ■ Assessment
diverse and changing with varied meanings depending on context. However, writers generally agree that spirituality involves the search for meaning, purpose and value in life, together with connection, security, belonging, fulfilment and reflection (Doherty, 2006; NHS Education for Scotland, 2009; Dalby et al, 2012). How people with dementia can be assisted to enhance their spiritual wellness is addressed later in this article. An important distinction is that spirituality can be linked to, but is not synonymous with, religion. Religion is a social institution that binds people together, and involves beliefs, practices, rituals and symbols that enable relatedness to the sacred or transcendent and the expression of the spiritual (Koenig et al, 2001; Shamy, 2003; Stevens Barnum 2011). Hettler (1976) identified spiritual wellness as one of six dimensions of wellness (Box 1). Indeed, it has been suggested that the spiritual integrates the ‘physical, psychological and social dimensions of life’ (Shamy, 2003: 60). Spiritual wellness involves the ‘search for meaning or purpose in human existence’ incorporating actions that concur with values and beliefs leading to the acquisition of a worldview (Hettler, 1976: 2). According to Strout and Howard (2012), spiritual wellness may contribute to cognitive protection in later life. Dimensions of wellness are understood to be interconnected; therefore, high wellness in one dimension may have a compensatory effect for lower wellness levels in another (Hettler, 1976). While this framework is not dementiaspecific, it may have relevance to dementia care, where a
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■ Social
wellness wellness ■ Physical wellness ■ Intellectual wellness ■ Spiritual wellness ■ Emotional wellness ■ Occupational
Source: Hettler, 1976 Box 2. Spiritual needs ■ To
be connected (to others, community and faith or beliefs) be valued, respected and appreciated (as a person regardless of memory) ■ To find value, meaning, dignity and purpose in life ■ To express faith, beliefs and values ■ To give love and be loved ■ To be known and accepted ■ To be compassionate, to give, to share ■ To be productive and successful ■ To forgive and be forgiven ■ To still become ■ To be thankful and have hope, strength and trust ■ To be understood ■ Transcendence - enhanced understanding and acceptance of life, meaning, interconnections with others and one’s own situation ■ To
Source: Narayanasamy, 1991; Bell and Troxel, 2001; Narayanasamy, 2010; Eliopolous, 2014; Haugan et al, 2014 Box 3. Questions to assist in identifying spiritual needs ■ Do
you have a way of making sense of things that happen to you? ■ What sources of support/help do you look to when life is difficult? ■ Would you like to see someone who can help you? ■ Would you like to see someone who can help you talk through the impact of this illness/life event? Source: RCN, 2011: 4
number of the dimensions can be challenged as a result of: ‘...progressive decline in multiple areas of function, including … memory, reasoning, communication skills and the ability to carry out daily activities’ (Department of Health, 2009: 15)
Spirituality and dementia According to Bell and Troxel (2001: 32), ‘spirit survives the onslaught of dementia’. This is an important point as there can be an assumption that, owing to the nature of dementia, the importance of aspects of the person such as one’s spirituality can be diminished, if not lost. However, there is nothing to suggest that people’s ability to experience emotional reactions diminishes in the same way as other skills such as reasoning (Killick, 2004). People with dementia are spiritual beings with ongoing spiritual needs (Fogg Berry,
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2005). Dementia can involve fear, insecurity, vulnerability and a sense of disconnection from place, particularly where there is difficulty for the person to identify others and sometimes himself/herself (Daly et al, 2013), and yet the need for love, affection and spiritual expression is universal. Therefore, people living with dementia rely on others to support identity, belonging, and their spiritual wellbeing, particularly as the condition advances. Research has demonstrated the central role of spirituality in the lives of people with dementia. Snyder (2003) analysed the testimonials of 28 people with dementia and identified four spiritual themes: the role of religion or spirituality in finding meaning in dementia; the role of religion and spirituality in coping with dementia; the influence of dementia on religious or spiritual practices; and the influence of dementia on faith. Spirituality was identified as a resource for people living with dementia. Dalby et al (2012) identified five themes reflecting the experience of spirituality in dementia: experience of faith; searching for meaning in dementia; ‘I’m not as I was’: changes and losses in experience of the self; staying intact; and current pathways to spiritual connection and expression. This last theme described how the participants engaged in spiritual living and sustained spiritual connections through ■■ Expression of spiritual values ■■ Positive attitudes ■■ Engagement in spiritual communities ■■ Spiritual practices ■■ Connection with people.
Assessment of spiritual needs The RCN (2011) stresses the importance of recognising, and providing appropriate responses to, spiritual needs. A number of writers have outlined spiritual needs broadly and for people with dementia (Box 2). While it is suggested that such needs are universal, each person’s expression of these needs is individual (Stoter, 1995). Where spiritual needs are not addressed, spiritual distress can occur (Doherty, 2006). This may manifest itself in feelings of hopelessness, guilt or loss of meaning (Narayanasamy, 2004) According to Béphage (2008), the identification of spiritual needs in dementia care can help nurses to make a positive difference to a person’s wellbeing. However, the means by which to accomplish an assessment of spiritual needs are not always clear (McSherry and Ross, 2002). O’Brien (2008) recommends a systematic approach and the collection of information relating to the level of spiritual development, religious tradition and practice, and other issues important to the person. However, O’Brien (2008) also highlights that many currently available nursing assessment frameworks frequently neglect the evaluation of spiritual needs and purely document spiritual/religious alignment (if present). In contrast, the assessment of spiritual needs is a deeply personal process that connects with what matters to a person and forms a basis for spiritual care planning; therefore, nurses must ensure that spiritual assessment is carried out in a nonthreatening, non-imposing manner (McSherry and Ross, 2002). In the presence of advanced dementia, this may involve a next of kin or significant other depending on the person’s ability to communicate. The RCN (2011) suggests a number
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Box 1. Six dimensions of wellness
British Journal of Nursing, 2014, Vol 23, No 14
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dementia of questions that may be helpful to nurses to identify spiritual needs (Box 3). In relation to the use of a specific spiritual assessment tool, those available (for example Narayanasamy’s (2004) Spiritual Assessment Guide) have generally not been adapted to meet the needs of people living with dementia. However, spiritual assessment tools are informative, providing guidance to nurses who need to adapt their use of them to suit the abilities of the person with dementia. Additionally, spiritual needs are dynamic. Therefore, assessment needs to be ongoing via additional methods such as a narrative approach that involves the interpretation of verbal and non-verbal cues (Power, 2006).
Work collaboratively
Support religious/faith practices
Implementing spiritual nursing for dementia ‘Spiritual care is that care which recognises and responds to the needs of the human spirit when faced with trauma, ill health or sadness … Spiritual care begins with encouraging human contact in compassionate relationship, and moves in whatever direction the need requires’ (NHS Education for Scotland, 2009: 6). One of the primary means to connect with those living with dementia is not via cognitive means, but via spiritual and emotional connection (Mackinlay and Trevitt, 2012). Spiritual care can assist the person to achieve wholeness and to feel integrated as a person who experiences balance, harmony and meaning (Clarke, 2013). It is therefore important that, while forms of expression, level of interest or ability to engage may change, spiritual care be maintained over the trajectory of dementia (Bell and Troxel, 2001). A review of the literature suggests a number of interventions to support spirituality in dementia and in later life care in general (Figure 1). Therefore, to effectively meet spiritual needs, nurses should possess the knowledge and skills to draw on the available interventions and understand that meeting the person with dementia’s specific spiritual needs may require a number of interconnected actions.
© 2014 MA Healthcare Ltd
Look to oneself Those who provide spiritual care for people with dementia are frequently urged to start with themselves (Bell and Troxel, 2001, Doherty, 2006). By becoming spiritually self-aware, it is more likely that the nurse may relate to the person with dementia authentically, i.e. person-to-person. According to Clarke (2013), authenticity in relationship emerges when one is true to oneself, a prerequisite for which is having self-insight and an awareness of one’s values and beliefs. Shamy (2003) and Eliopolous (2014) go even further indicating the importance of the nurse’s being available or fully present to attend to the person’s expressions of spirituality. To this end, Goodall (2009) outlines the ‘three Rs’ of spiritual care: ■■ Reflection—attention to the wellbeing of the person with dementia and observation for signs of ill-being and spiritual need ■■ Relationship—the means by which need is met and engagement in spiritual care is enacted ■■ Restoration—recognition of positive change in the person with dementia which is linked to the above.
British Journal of Nursing, 2014, Vol 23, No 14
Recognise the importance of people as interrelational beings
Look to oneself
Respect the individual and his/her spiritual beliefs and practice
Figure 1. Ways in which to support spirituality in dementia
Recognise the importance of people as inter-relational beings McCormack (2004) emphasises ‘being in relation’ as necessary to person-centred care, stating that this involves the nurturance of relationships. To this end, the importance of observation, listening and attending must be emphasised because acts of respect cannot be under-estimated (RCN, 2011; Stevens Barnum, 2011; Clarke, 2013). It is suggested that people in spiritual need require human connection, to experience their being cared for and about, and to know that another appreciates their distress (Stevens Barnum, 2011). To establish a connection with the person with dementia is a fundamental step in the delivering of spiritual care as it is in the context of relationships with others that people come to know and become who they are.
Respect the individual Doherty (2006) suggests that people living with dementia will need to approach spirituality differently to those with conditions in which cognition is not progressively affected. To this end, she suggests that spiritual care in dementia is similar to the tenets of person-centred care. According to Kitwood (1997), the aim of person-centred dementia care is to uphold personhood, while Goodall (2011) indicates that effective spiritual care connects with a person’s memories and emotions in achieving this end. Hughes (2011: 199) conceptualises ‘spirituality’ as ‘a non-negotiable ingredient of personhood’. This involves a focus on the process of nursing care, on the upholding of the person’s beliefs and values, shared decision-making and the implementation of holistic nursing care (McCormack and McCance, 2010). Stuckey et al
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n Spiritual
care of patients with dementia can be complex and while it is an important aspect of care, such care is sometimes neglected
n The
identification of spiritual care needs through spiritual assessment is necessary to develop a spiritual care plan
n A
number of interventions are available (to nurses) with which to meet spiritual needs in general and to meet those of the person with dementia
n Nurses
should understand that meeting the person with dementia’s specific spiritual needs may require a number of interconnected actions
(2002) recommend a number of non-cognitive ways in which to uphold spirituality in people with dementia, including an appreciation of nature and music. Respect for spiritual or religious practices such as dietary requirements or clothing (Eliopoulous, 2014), focusing on abilities and the celebration of achievements past, present and future are further ways to respect an individual’s spirituality (Killick, 2004).
Support religious/faith practices The maintaining of connection with familiar religious practices sustains faith connection for people with dementia (MacKinlay and Trevitt, 2012). It also facilitates psychological wellbeing and promotes feelings of inclusion in a faith community (Fogg Berry, 2005). To support faith practices, nurses should work with faith communities (NHS Education Scotland, 2009; Higgins, 2013; Eliopoulous, 2014). This will meet the individual’s spiritual needs and build linkages between the care setting and the local community. However, nurses must ensure that the faith practices accessed are appropriate to the individual’s current and/or past biography and to his/her strengths and abilities, or are modified to be so. It is also important not to assume that a person who was raised in a particular faith or religious belief system still adheres to its tenets. Equally important is the need to respect the spirituality of those who profess no religious or faith affiliations or who are atheist or agnostic, as all people seek meaning and coherence in their lives (Puchalski, 2010). Shamy (2003) further cautions nurses not to assume that engagement in religious practice is a guarantee of spiritual health. This suggests that the evaluation of spiritual caring interventions in terms of promoting spiritual integrity is pivotal to ascertain the efficacy of spiritual care (Narayanasamy, 2004). Ways to support religious/faith practices might include: ■■ Attendance at religious or spiritual services ■■ Facilitation of prayer, reading or listening to familiar scripture (Fogg Berry, 2005) ■■ Enabling the discovery of meaning and hope, e.g. through discussion and expression of feelings. This is particularly important early on in the trajectory of the condition, from the point of diagnosis, as highlighted in the wider dementia literature (Wolverson Radborne et al, 2010) ■■ Provision of time for solitude to facilitate reflection, meditation and connection to the divine (Eliopoulos, 2014) ■■ Visible religious symbology appropriate to the individual’s religion (Shamy, 2003; Goodall, 2011) ■■ Continued connection with communities.
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Work collaboratively Spiritual care is not the domain of any one professional grouping; therefore nurses need to work collaboratively with the person, his/her relatives or significant other(s) and with members of the health and social care team, including pastoral care and a variety of faith traditions (McSherry and Ross, 2002). An important aspect of collaborative working is knowing when there is a need to refer to another more qualified or appropriate source (RCN, 2011).
Conclusion While this article has explored how nurses may provide spiritual support for people with dementia, Narayanasamy (2010) calls on anyone who does not feel confident or competent to meet an individual’s spiritual need, to seek the intervention of a more qualified person. This indicates a need for nurses to reflect on their ability to provide spiritual care and highlights the need for education, skill acquisition and competency. However, the content, process and outcomes of spirituality education for nurses are not currently clear and a sufficient evidence-base is lacking (Timmins and Neill, 2013). When considering spirituality in relation to people living with dementia, evidence is limited; this implies that those providing care may be at risk of their neglecting the spiritual needs of the person. Therefore, the need to explore spiritual care in dementia is pressing (Higgins, 2013).This article has provided a basis for practice, and for reflection on practice, for those who are engaged in the support of spirituality for BJN people living with dementia. Conflict of interest: none. Bell V,Troxel D (2001) Spirituality and the person with dementia – a view from the field. Alzheimer’s Care Quarterly 2(2): 31-45 Béphage G (2008) Care approaches to spirituality and dementia. Nursing & Residential Care 10(3): 134-7 Clarke J (2013) Spiritual Care in Everyday Nursing Practice: A New Approach. Palgrave Macmillan, Basingstoke Dalby P, Sperlinger DJ, Boddington S (2012) The lived experience of spirituality and dementia in older people living with mild to moderate dementia. Dementia 11(1): 75-94. doi: 10.1177/1471301211416608. Epub 2011 Daly L, McCarron M, Higgins A, McCallion P (2013) ‘Sustaining Place’ - a grounded theory of how informal carers of people with dementia manage alterations to relationships within their social worlds. J Clin Nurs 22(3-4): 501-12 doi: 10.1111/jocn.12003. Epub 2012 Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. Department of Health, London. Doherty D (2006) Spirituality and dementia. Spirituality and Health International 7(4): 203-10. doi: 10.1002/shi.287. Epub 2006 Eliopoulous C (2014) Gerontological Nursing. 8th edn. Wolters Kluwer Health/ Lippincott Williams and Wilkins, Philadelphia. Fogg Berry K (2005) Case Study. Spirituality and the cognitively impaired. Age in Action 20(1): 1-15. http://tinyurl.com/o7w9lky (accessed 9 July 2014) Frankl VE (1963) Man’s Search for Meaning.Washington Square Press, Simon and Schuster, New York Goodall M (2009) The evaluation of spiritual care in a dementia care setting. Dementia 8(2): 167-83. doi: 10.1177/1471301209103249 Goodall M (2011) Loving attention: Chaplaincy as a model of spiritual care for those with dementia. In: Jewell A ed, Spirituality and Personhood in Dementia. Jessica Kingsley Publishers, London :131-40 Haugan G, Rannestad T, Hammervold R, Garåsen H, Espnes GA (2014) The relationships between self-transcendence and spiritual well-being in cognitively intact nursing home patients. Int J Older People Nurs 9(1): 65– 78. doi: 10.1111/opn.12018. Epub 2013 Hettler B (1976) The Six Dimensions of Wellness. The National Wellness Institute, Stevens Point Wisconsin. http://tinyurl.com/lzabory (accessed 9 July 2014) Higgins P (2013) Meeting the religious needs of residents with dementia. Nurs Older People 25(9): 25-9 doi: 10.7748/nop2013.11.25.9.25.e501 Hughes J (2011) A situated embodied view of the person with dementia.Where does the spiritual come in? In: Jewell A ed, Spirituality and Personhood in Dementia. Jessica Kingsley Publishers, London:198-206 International Council of Nurses (2012) The ICN Code of Ethics for Nurses.
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Key points
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dementia 2006-10. Br J Nurs 20(12): 743-9 Power J (2006) Spiritual assessment: developing an assessment tool. Nurs Older People 18(2): 16-18 Puchalski C (2010) The spiritual history: an essential element of patient-centred care. In: McSherry W, Ross L, eds, Spiritual Assessment in Healthcare Practice. M&K Publishing, Keswick: 79-93 Reinert KG, Koenig H (2013) Re-examining definitions of spirituality in nursing research. J Adv Nursing 69(12): 2622-34 Royal College of Nursing (2011) Spirituality in Nursing Care: A Pocket Guide. Royal College of Nursing, London. http://tinyurl.com/ll6cgo4 (accessed 9 July 2014) Shamy E (2003) A Guide to the Spiritual Dimension of Care for People with Alzheimer’s Disease and Related Dementia: More than Body, Mind and Breath. Jessica Kingsley Publishers, London. Snyder L (2003) Satisfactions and challenges in spiritual faith and practice for persons with dementia. Dementia 2(3): 299-313. doi: 10.1177/14713012030023002 Stevens Barnum B (2011) Spirituality in Nursing.The Challenges of Complexity. 3rd edn. Springer Publishing Company, New York Stoter D (1995) Spiritual Aspects of Health Care. Mosby, London. Strout KA, Howard EP (2012) The six dimensions of wellness and cognition in aging adults. Journal of Holistic Nursing 30(3): 195-204. doi:10.1177/0898010112440883 Stuckey JC, Post S, Ollerton S, Fallcreek SJ, Whitehouse P (2002) Alzheimer’s disease, religion, and the ethics of respect for spirituality. A community dialogue. Alzheimer’s Care Quarterly 3(3): 199-207 Timmins F, Neill F (2013) Teaching nursing students about spiritual care – a review of the literature. Nurse Educ Pract 13(6): 499-505. doi: 10.1016/j. nepr.2013.01.011. Wolverson Radbourne EL, Clarke C, Moniz-Cook E (2010) Remaining hopeful in early-stage dementia: a qualitative study. Aging Ment Health 14(4): 450-60. doi: 10.1080/13607860903483110.
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International Council of Nurses, Geneva. http://tinyurl.com/by8duos (accessed 9 July 2014) Killick J (2004) Dementia, identity and spirituality. Journal of Religious Gerontology 16(3-4): 59-74. doi: 10.1300/J078v16n03_05 Kitwood T (1997) Dementia Reconsidered: The Person Comes First. Open University Press, Buckingham Koenig HG, McCullogh ME, Larson DB (2001) Handbook of Religion and Health. 1st edn. Oxford University Press, New York. MacKinlay E. Trevit C (2012) Finding Meaning in the Experience of Dementia. Jessica Kingsley Publishers, London. McCormack B (2004) Person-centredness in gerontological nursing: an overview of the literature. J Clin Nurs 13(3a): 31-8 McCormack B, McCance T (2010) Person Centred Nursing: Theory and Practice. Wiley-Blackwell, Oxford McSherry W (2007) The Meaning of Spirituality and Spiritual Care within Nursing and Health Care Practice. Quay Books, London. McSherry W, Ross L (2002) Dilemmas of spiritual assessment : considerations for nursing practice. J Adv Nurs 38(5): 479-88 McSherry W, Smith J (2012) Spiritual care. In: McSherry W, McSherry R, Watson R, eds, Care in Nursing. Principles,Values and Skills. Oxford University Press, Oxford. Narayanasamy A (1991) Spiritual Care: A Resource Guide. Quay Books, London Narayanasamy A (2004) The puzzle of spirituality for nursing: a guide to practical assessment. Br J Nurs 13(19): 1140-4 Narayanasamy A (2010) Recognising spiritual needs: In: McSherry W, Ross L, eds, Spiritual Assessment in Healthcare Practice. M&K Publishing, Keswick: 37-55 NHS Education for Scotland (2009) Spiritual Care Matters. An Introductory Resource for All NHS Scotland Staff. NHS Education for Scotland, Edinburgh. http://tinyurl.com/a36hnvh (accessed 9 July 2014) O’Brien ME (2008) Spirituality in Nursing. Standing on Holy Ground. Jones Bartlett Publishing, Boston Pike J (2011) Spirituality in nursing: a systematic review of the literature from
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Attending to the spiritual in dementia care nursing Louise Daly and Elizabeth Fahey-McCarthy
S
piritual care is an advocated component of nursing care (Royal College of Nursing (RCN), 2011; International Council of Nurses, 2012; Reinert and Koenig, 2013). However, despite a wealth of literature on the subjects of spirituality and spiritual care, a lack of consensus and conceptual clarity on their definition, meaning and content remains (McSherry, 2007; Reinert and Koenig, 2013). In particular, while there is a lot of writing on dementia and spirituality, there is limited evidence exploring how these relate to each other (Doherty, 2006). Spiritual needs can be challenging in dementia care, as they are not always prioritised among other care needs and it can be difficult to ascertain the person’s spiritual needs, particularly in advanced dementia. In addition, care staff may not always have the necessary experience or skills to ascertain and/or meet spiritual needs. This is concerning as care that does not address the spiritual, regards the person as less than human (Shamy, 2003). The purpose of this article is to explore both spiritual care for the person with dementia and some of the ways in which nurses can support the person’s spirituality.
Understanding spirituality According to many writers, spirituality is the core of who we are (Frankl, 1963; Narayanasamy, 2010; Eliopoulos, 2014). It can be understood as: ‘Universal, deeply personal and individual; it goes beyond formal notions of ritual or religious practice to encompass the unique capacity of each individual. It is at the core and essence of who we are, that spark which permeates the entire fabric of the person and demands that we are all worthy of dignity and respect. It transcends intellectual capability, elevating the status of all humanity to that of the sacred’ (McSherry and Smith, 2012:118).
© 2014 MA Healthcare Ltd
This understanding demonstrates that spirituality is complex and subjective, that it involves the values and beliefs held by a person but that it is not reliant on intellectual capacity, which may be challenged in the presence of dementia. Pike (2011) further suggests that spirituality is
Louise Daly, Assistant Professor; Elizabeth Fahey-McCarthy, Assistant Professor at School of Nursing and Midwifery, Trinity College Dublin. Accepted for publication: June 2014
British Journal of Nursing, 2014, Vol 23, No 14
Abstract
Spirituality is a complex and subjective concept. However, spiritual wellness is an important component in a person’s overall well-being and the spiritual support of patients is central to nursing care. People with dementia may not be well-supported in this aspect of care; this may lead to spiritual distress. Spiritual needs may be identified by taking the person’s spiritual history or, in the case of advanced dementia, by asking a person’s significant others about the important spiritual aspects of the person’s life. Spiritual care for people with dementia involves reflective practice and meaningful engagement with the person with dementia, so as to facilitate shared understanding. Furthermore, the support of the spiritual and religious beliefs of the person need to be facilitated within an individualised or personcentred approach to care and delivered within a multi-disciplinary collaborative context. Key words: Dementia ■ Spirituality ■ Nursing care ■ Assessment
diverse and changing with varied meanings depending on context. However, writers generally agree that spirituality involves the search for meaning, purpose and value in life, together with connection, security, belonging, fulfilment and reflection (Doherty, 2006; NHS Education for Scotland, 2009; Dalby et al, 2012). How people with dementia can be assisted to enhance their spiritual wellness is addressed later in this article. An important distinction is that spirituality can be linked to, but is not synonymous with, religion. Religion is a social institution that binds people together, and involves beliefs, practices, rituals and symbols that enable relatedness to the sacred or transcendent and the expression of the spiritual (Koenig et al, 2001; Shamy, 2003; Stevens Barnum 2011). Hettler (1976) identified spiritual wellness as one of six dimensions of wellness (Box 1). Indeed, it has been suggested that the spiritual integrates the ‘physical, psychological and social dimensions of life’ (Shamy, 2003: 60). Spiritual wellness involves the ‘search for meaning or purpose in human existence’ incorporating actions that concur with values and beliefs leading to the acquisition of a worldview (Hettler, 1976: 2). According to Strout and Howard (2012), spiritual wellness may contribute to cognitive protection in later life. Dimensions of wellness are understood to be interconnected; therefore, high wellness in one dimension may have a compensatory effect for lower wellness levels in another (Hettler, 1976). While this framework is not dementiaspecific, it may have relevance to dementia care, where a
787
British Journal of Nursing. Downloaded from magonlinelibrary.com by 193.061.135.112 on October 13, 2015. For personal use only. No other uses without permission. . All rights reserved.
■ Social
wellness wellness ■ Physical wellness ■ Intellectual wellness ■ Spiritual wellness ■ Emotional wellness ■ Occupational
Source: Hettler, 1976 Box 2. Spiritual needs ■ To
be connected (to others, community and faith or beliefs) be valued, respected and appreciated (as a person regardless of memory) ■ To find value, meaning, dignity and purpose in life ■ To express faith, beliefs and values ■ To give love and be loved ■ To be known and accepted ■ To be compassionate, to give, to share ■ To be productive and successful ■ To forgive and be forgiven ■ To still become ■ To be thankful and have hope, strength and trust ■ To be understood ■ Transcendence - enhanced understanding and acceptance of life, meaning, interconnections with others and one’s own situation ■ To
Source: Narayanasamy, 1991; Bell and Troxel, 2001; Narayanasamy, 2010; Eliopolous, 2014; Haugan et al, 2014 Box 3. Questions to assist in identifying spiritual needs ■ Do
you have a way of making sense of things that happen to you? ■ What sources of support/help do you look to when life is difficult? ■ Would you like to see someone who can help you? ■ Would you like to see someone who can help you talk through the impact of this illness/life event? Source: RCN, 2011: 4
number of the dimensions can be challenged as a result of: ‘...progressive decline in multiple areas of function, including … memory, reasoning, communication skills and the ability to carry out daily activities’ (Department of Health, 2009: 15)
Spirituality and dementia According to Bell and Troxel (2001: 32), ‘spirit survives the onslaught of dementia’. This is an important point as there can be an assumption that, owing to the nature of dementia, the importance of aspects of the person such as one’s spirituality can be diminished, if not lost. However, there is nothing to suggest that people’s ability to experience emotional reactions diminishes in the same way as other skills such as reasoning (Killick, 2004). People with dementia are spiritual beings with ongoing spiritual needs (Fogg Berry,
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2005). Dementia can involve fear, insecurity, vulnerability and a sense of disconnection from place, particularly where there is difficulty for the person to identify others and sometimes himself/herself (Daly et al, 2013), and yet the need for love, affection and spiritual expression is universal. Therefore, people living with dementia rely on others to support identity, belonging, and their spiritual wellbeing, particularly as the condition advances. Research has demonstrated the central role of spirituality in the lives of people with dementia. Snyder (2003) analysed the testimonials of 28 people with dementia and identified four spiritual themes: the role of religion or spirituality in finding meaning in dementia; the role of religion and spirituality in coping with dementia; the influence of dementia on religious or spiritual practices; and the influence of dementia on faith. Spirituality was identified as a resource for people living with dementia. Dalby et al (2012) identified five themes reflecting the experience of spirituality in dementia: experience of faith; searching for meaning in dementia; ‘I’m not as I was’: changes and losses in experience of the self; staying intact; and current pathways to spiritual connection and expression. This last theme described how the participants engaged in spiritual living and sustained spiritual connections through ■■ Expression of spiritual values ■■ Positive attitudes ■■ Engagement in spiritual communities ■■ Spiritual practices ■■ Connection with people.
Assessment of spiritual needs The RCN (2011) stresses the importance of recognising, and providing appropriate responses to, spiritual needs. A number of writers have outlined spiritual needs broadly and for people with dementia (Box 2). While it is suggested that such needs are universal, each person’s expression of these needs is individual (Stoter, 1995). Where spiritual needs are not addressed, spiritual distress can occur (Doherty, 2006). This may manifest itself in feelings of hopelessness, guilt or loss of meaning (Narayanasamy, 2004) According to Béphage (2008), the identification of spiritual needs in dementia care can help nurses to make a positive difference to a person’s wellbeing. However, the means by which to accomplish an assessment of spiritual needs are not always clear (McSherry and Ross, 2002). O’Brien (2008) recommends a systematic approach and the collection of information relating to the level of spiritual development, religious tradition and practice, and other issues important to the person. However, O’Brien (2008) also highlights that many currently available nursing assessment frameworks frequently neglect the evaluation of spiritual needs and purely document spiritual/religious alignment (if present). In contrast, the assessment of spiritual needs is a deeply personal process that connects with what matters to a person and forms a basis for spiritual care planning; therefore, nurses must ensure that spiritual assessment is carried out in a nonthreatening, non-imposing manner (McSherry and Ross, 2002). In the presence of advanced dementia, this may involve a next of kin or significant other depending on the person’s ability to communicate. The RCN (2011) suggests a number
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Box 1. Six dimensions of wellness
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dementia of questions that may be helpful to nurses to identify spiritual needs (Box 3). In relation to the use of a specific spiritual assessment tool, those available (for example Narayanasamy’s (2004) Spiritual Assessment Guide) have generally not been adapted to meet the needs of people living with dementia. However, spiritual assessment tools are informative, providing guidance to nurses who need to adapt their use of them to suit the abilities of the person with dementia. Additionally, spiritual needs are dynamic. Therefore, assessment needs to be ongoing via additional methods such as a narrative approach that involves the interpretation of verbal and non-verbal cues (Power, 2006).
Work collaboratively
Support religious/faith practices
Implementing spiritual nursing for dementia ‘Spiritual care is that care which recognises and responds to the needs of the human spirit when faced with trauma, ill health or sadness … Spiritual care begins with encouraging human contact in compassionate relationship, and moves in whatever direction the need requires’ (NHS Education for Scotland, 2009: 6). One of the primary means to connect with those living with dementia is not via cognitive means, but via spiritual and emotional connection (Mackinlay and Trevitt, 2012). Spiritual care can assist the person to achieve wholeness and to feel integrated as a person who experiences balance, harmony and meaning (Clarke, 2013). It is therefore important that, while forms of expression, level of interest or ability to engage may change, spiritual care be maintained over the trajectory of dementia (Bell and Troxel, 2001). A review of the literature suggests a number of interventions to support spirituality in dementia and in later life care in general (Figure 1). Therefore, to effectively meet spiritual needs, nurses should possess the knowledge and skills to draw on the available interventions and understand that meeting the person with dementia’s specific spiritual needs may require a number of interconnected actions.
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Look to oneself Those who provide spiritual care for people with dementia are frequently urged to start with themselves (Bell and Troxel, 2001, Doherty, 2006). By becoming spiritually self-aware, it is more likely that the nurse may relate to the person with dementia authentically, i.e. person-to-person. According to Clarke (2013), authenticity in relationship emerges when one is true to oneself, a prerequisite for which is having self-insight and an awareness of one’s values and beliefs. Shamy (2003) and Eliopolous (2014) go even further indicating the importance of the nurse’s being available or fully present to attend to the person’s expressions of spirituality. To this end, Goodall (2009) outlines the ‘three Rs’ of spiritual care: ■■ Reflection—attention to the wellbeing of the person with dementia and observation for signs of ill-being and spiritual need ■■ Relationship—the means by which need is met and engagement in spiritual care is enacted ■■ Restoration—recognition of positive change in the person with dementia which is linked to the above.
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Recognise the importance of people as interrelational beings
Look to oneself
Respect the individual and his/her spiritual beliefs and practice
Figure 1. Ways in which to support spirituality in dementia
Recognise the importance of people as inter-relational beings McCormack (2004) emphasises ‘being in relation’ as necessary to person-centred care, stating that this involves the nurturance of relationships. To this end, the importance of observation, listening and attending must be emphasised because acts of respect cannot be under-estimated (RCN, 2011; Stevens Barnum, 2011; Clarke, 2013). It is suggested that people in spiritual need require human connection, to experience their being cared for and about, and to know that another appreciates their distress (Stevens Barnum, 2011). To establish a connection with the person with dementia is a fundamental step in the delivering of spiritual care as it is in the context of relationships with others that people come to know and become who they are.
Respect the individual Doherty (2006) suggests that people living with dementia will need to approach spirituality differently to those with conditions in which cognition is not progressively affected. To this end, she suggests that spiritual care in dementia is similar to the tenets of person-centred care. According to Kitwood (1997), the aim of person-centred dementia care is to uphold personhood, while Goodall (2011) indicates that effective spiritual care connects with a person’s memories and emotions in achieving this end. Hughes (2011: 199) conceptualises ‘spirituality’ as ‘a non-negotiable ingredient of personhood’. This involves a focus on the process of nursing care, on the upholding of the person’s beliefs and values, shared decision-making and the implementation of holistic nursing care (McCormack and McCance, 2010). Stuckey et al
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n Spiritual
care of patients with dementia can be complex and while it is an important aspect of care, such care is sometimes neglected
n The
identification of spiritual care needs through spiritual assessment is necessary to develop a spiritual care plan
n A
number of interventions are available (to nurses) with which to meet spiritual needs in general and to meet those of the person with dementia
n Nurses
should understand that meeting the person with dementia’s specific spiritual needs may require a number of interconnected actions
(2002) recommend a number of non-cognitive ways in which to uphold spirituality in people with dementia, including an appreciation of nature and music. Respect for spiritual or religious practices such as dietary requirements or clothing (Eliopoulous, 2014), focusing on abilities and the celebration of achievements past, present and future are further ways to respect an individual’s spirituality (Killick, 2004).
Support religious/faith practices The maintaining of connection with familiar religious practices sustains faith connection for people with dementia (MacKinlay and Trevitt, 2012). It also facilitates psychological wellbeing and promotes feelings of inclusion in a faith community (Fogg Berry, 2005). To support faith practices, nurses should work with faith communities (NHS Education Scotland, 2009; Higgins, 2013; Eliopoulous, 2014). This will meet the individual’s spiritual needs and build linkages between the care setting and the local community. However, nurses must ensure that the faith practices accessed are appropriate to the individual’s current and/or past biography and to his/her strengths and abilities, or are modified to be so. It is also important not to assume that a person who was raised in a particular faith or religious belief system still adheres to its tenets. Equally important is the need to respect the spirituality of those who profess no religious or faith affiliations or who are atheist or agnostic, as all people seek meaning and coherence in their lives (Puchalski, 2010). Shamy (2003) further cautions nurses not to assume that engagement in religious practice is a guarantee of spiritual health. This suggests that the evaluation of spiritual caring interventions in terms of promoting spiritual integrity is pivotal to ascertain the efficacy of spiritual care (Narayanasamy, 2004). Ways to support religious/faith practices might include: ■■ Attendance at religious or spiritual services ■■ Facilitation of prayer, reading or listening to familiar scripture (Fogg Berry, 2005) ■■ Enabling the discovery of meaning and hope, e.g. through discussion and expression of feelings. This is particularly important early on in the trajectory of the condition, from the point of diagnosis, as highlighted in the wider dementia literature (Wolverson Radborne et al, 2010) ■■ Provision of time for solitude to facilitate reflection, meditation and connection to the divine (Eliopoulos, 2014) ■■ Visible religious symbology appropriate to the individual’s religion (Shamy, 2003; Goodall, 2011) ■■ Continued connection with communities.
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Work collaboratively Spiritual care is not the domain of any one professional grouping; therefore nurses need to work collaboratively with the person, his/her relatives or significant other(s) and with members of the health and social care team, including pastoral care and a variety of faith traditions (McSherry and Ross, 2002). An important aspect of collaborative working is knowing when there is a need to refer to another more qualified or appropriate source (RCN, 2011).
Conclusion While this article has explored how nurses may provide spiritual support for people with dementia, Narayanasamy (2010) calls on anyone who does not feel confident or competent to meet an individual’s spiritual need, to seek the intervention of a more qualified person. This indicates a need for nurses to reflect on their ability to provide spiritual care and highlights the need for education, skill acquisition and competency. However, the content, process and outcomes of spirituality education for nurses are not currently clear and a sufficient evidence-base is lacking (Timmins and Neill, 2013). When considering spirituality in relation to people living with dementia, evidence is limited; this implies that those providing care may be at risk of their neglecting the spiritual needs of the person. Therefore, the need to explore spiritual care in dementia is pressing (Higgins, 2013).This article has provided a basis for practice, and for reflection on practice, for those who are engaged in the support of spirituality for BJN people living with dementia. Conflict of interest: none. Bell V,Troxel D (2001) Spirituality and the person with dementia – a view from the field. Alzheimer’s Care Quarterly 2(2): 31-45 Béphage G (2008) Care approaches to spirituality and dementia. Nursing & Residential Care 10(3): 134-7 Clarke J (2013) Spiritual Care in Everyday Nursing Practice: A New Approach. Palgrave Macmillan, Basingstoke Dalby P, Sperlinger DJ, Boddington S (2012) The lived experience of spirituality and dementia in older people living with mild to moderate dementia. Dementia 11(1): 75-94. doi: 10.1177/1471301211416608. Epub 2011 Daly L, McCarron M, Higgins A, McCallion P (2013) ‘Sustaining Place’ - a grounded theory of how informal carers of people with dementia manage alterations to relationships within their social worlds. J Clin Nurs 22(3-4): 501-12 doi: 10.1111/jocn.12003. Epub 2012 Department of Health (2009) Living Well with Dementia: A National Dementia Strategy. Department of Health, London. Doherty D (2006) Spirituality and dementia. Spirituality and Health International 7(4): 203-10. doi: 10.1002/shi.287. Epub 2006 Eliopoulous C (2014) Gerontological Nursing. 8th edn. Wolters Kluwer Health/ Lippincott Williams and Wilkins, Philadelphia. Fogg Berry K (2005) Case Study. Spirituality and the cognitively impaired. Age in Action 20(1): 1-15. http://tinyurl.com/o7w9lky (accessed 9 July 2014) Frankl VE (1963) Man’s Search for Meaning.Washington Square Press, Simon and Schuster, New York Goodall M (2009) The evaluation of spiritual care in a dementia care setting. Dementia 8(2): 167-83. doi: 10.1177/1471301209103249 Goodall M (2011) Loving attention: Chaplaincy as a model of spiritual care for those with dementia. In: Jewell A ed, Spirituality and Personhood in Dementia. Jessica Kingsley Publishers, London :131-40 Haugan G, Rannestad T, Hammervold R, Garåsen H, Espnes GA (2014) The relationships between self-transcendence and spiritual well-being in cognitively intact nursing home patients. Int J Older People Nurs 9(1): 65– 78. doi: 10.1111/opn.12018. Epub 2013 Hettler B (1976) The Six Dimensions of Wellness. The National Wellness Institute, Stevens Point Wisconsin. http://tinyurl.com/lzabory (accessed 9 July 2014) Higgins P (2013) Meeting the religious needs of residents with dementia. Nurs Older People 25(9): 25-9 doi: 10.7748/nop2013.11.25.9.25.e501 Hughes J (2011) A situated embodied view of the person with dementia.Where does the spiritual come in? In: Jewell A ed, Spirituality and Personhood in Dementia. Jessica Kingsley Publishers, London:198-206 International Council of Nurses (2012) The ICN Code of Ethics for Nurses.
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Key points
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